The cost of care

“We have spent, for many, many years, thousands upon thousands of dollars on medication per year, un-reimbursed, not tax-deductible,” she said.

And now [Prime Minister Kevin] Rudd’s coming along and he’s saying, ‘well, you don’t need that any more’. Let me tell you, Mr Rudd, you do. How dare you, when people are relying on it?”

Margaret says she and her husband sold their home years ago in order to buy an insulin pump.

“The bonus and that sort of money is going to go towards that sort of thing for people who are in that situation,” she said.

“Things like school uniforms, food for kids, that’s where people are at. This is what people don’t understand and you know what, it is so scary [for them]. It’s so very scary because not only are you dealing with life and death but you’ve got this financial thing too.”

Margaret says money – or the lack of it – is something carers are concerned about.

“In the last four months I’ve had an ambulance here every month,” she said.

“I have to have private health insurance because if I didn’t I can’t get treatment for John.

“So our ambulances are covered, but what about if I didn’t have private health cover? Then I’d have to think twice about ringing it.

“So when John’s fitting and blue on the floor, I’d be like, “Oh God, can I afford this bloody ambulance?”